‘I’m at breaking point’: Young disabled and carers in virus crisis

Ms Stevens, who also has a daughter, Autumn, 10, at home, said Jerrah’s carers resumed contact with him two weeks ago when she realised she wasn’t coping.

But she had to buy them masks and gloves, which weren’t supplied by their agency.

Ms Stevens found that Jerrah’s speech, occupational therapy and physiotherapy fell by the wayside during the lockdown because online sessions didn’t work.

Jerrah also did not respond to his specialist school’s video classes.

Ms Stevens was among 700 respondents to a survey throwing harsh light on how the COVID-19 pandemic has affected the lives of children and young people with disabilities, and their families.

Key findings included that one-third had support workers cancel services during the pandemic.

And 64 per cent were unable to buy supplies such as groceries, special dietary products, toilet paper, hand sanitiser and incontinence pads.

Half of survey respondents reported a decline in their mental health either for themselves, or for the child or young person with a disability.

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The survey called More Than Isolated was released on Thursday by national organisation Children and Young People with Disability Australia (CYDA) and the University of NSW.

It found that the COVID-19 crisis “reinforced” existing inequities, and that there was a lack of coherent national response compared to with other sectors such as aged care.

Mary Sayers, CYDA’s chief executive, said that ‘‘all responses to a crisis such as COVID-19 must be designed to avoid creating further educational and social disconnection and inequality’’.

She said there was a lack of information about the coronavirus that was targeted to children and young people with disability and their families, with 82 per cent of respondents stating they lacked information.

Ms Stevens agreed, saying there was also ‘‘a lack of clarity’’ about what NDIS [National Disability Insurance Scheme] funding could be used for during the lockdown.

Ms Stevens said in future, authorities should keep in mind ‘‘that my son’s needs aren’t one size fits all”.

‘‘When you’re trying to deliver remote learning to students whose needs are very complex, you’re not going to be able to meet the needs of every child.

‘‘So perhaps that needs to be re-thought: how they deliver remote learning in a crisis, how they make sure that children with disabilities aren’t left behind when something like this happens.’’